Charlie’s Story

Symptoms started for me when I was 25, seven years ago, with what felt like a pulled hamstring. Like many AS sufferers I thought at first that this was some sort of injury and just waited for it to heal. Instead, over the next few months the pain mysteriously started to move from place to place in my legs and girdle area, increasing in intensity.

I was referred to a neurologist, who was mostly interested to find out whether this was a symptom of Myotonic Muscular Dystrophe, another genetic disease that runs in my family. My father died of it, and my sister has it pretty bad. I was tested and it turns out I dodged that one (pretty sure I got the HLA-B27 from my mom). My family has a curse on it, which probably began with my unspeakably evil great-grandfather.

Anyway the neurologist sent me on my way saying that this was an issue with posture or a lingering soft-tissue injury that would get better with stretching and strengthening, which made sense to me. But by that fall, things got really bad. I felt like I was walking waist deep in water, and the water was pain. The inhibition to move at all was so powerful that I lost my natural gait, and had to walk by micromanaging my legs.

Soon, pain between my shoulder blades would show up in the middle of the night and keep me awake, and while I was lying in bed I discovered a different issue. I began feeling palpitations. At first I mistook these for air bubbles, like little low pre-burp gurgles, but soon realized they were sensations coming from my heart. I would hear the normal thump-thump . . . thump-thump of my heartbeat, but then, occasionally, a thump-thump, thumthi . . . . . . . THUMPthi . . . . . . . . . . . . THUMPthi. . . . I went to the hospital and an echocardiogram determined that my heart was only pumping out about 30% of its volume with each beat (a healthy heart pumps 55-60%)–a condition called cardiomyopathy. I was in danger of “Sudden Death”, where the heart falls out of rhythm and then just gives up like a confused dancer. I was put on beta blockers and it was recommended that I have a defibrillator (an ICD) implanted in my chest to automatically administer an electric shock if my heart stopped. This was all while I was 25-26. I actually think that one reason it took so long for me to get an AS diagnosis was that I was much more worried about my heart than my pain. It was only later when I got the AS diagnosis that I learned the two conditions are probably related.

For years nothing changed–six years to be exact–and the pain continued to come and go. Then in 2010-2011 pain in my lower back got pretty bad and just stuck around–I mean like no relief at all for sixteen months. About a year ago I moved to New Hampshire, and switched PTs. Interestingly this new PT was the one (not the two neurologists, the three cardiologists, the four or five GPs I saw at the University of Chicago Student Care Center) who said I ought to get checked for AS. My X-rays and MRI showed some milky ribbons of calcification in the sacrum and spine–the beginnings of fusion. So I was diagnosed. This was August of 2011.

I was referred to a rheumatologist and she did what (apparently, as I’ve read of others’ experiences) rheumatologists do: she gave me a short list of pharmaceuticals, starting with stronger NSAIDS than I had been taking. For the next four months I was on the NSAIDs, and these didn’t work at all. This worried me because the next in her “big bag of tricks”–these were her secretary’s words on the phone, though to me this doesn’t seem like a very big bag–seemed scary to me: the immunosuppressant anti-TNFa drugs.

That was when I began to experiment with diet. This was supposed to be simple: I had heard that some foods are ‘inflammatory’ like wheat, and I thought I’d just get a list of those so I could avoid them. But this led me to a book on the Paleo diet (Robb Wolf’s) where I first read about leaky gut and autoimmune disease. I thought that I should try something more ambitious. I was one month into a Paleo diet, with little progress on the pain, when I finally ran across a reference to the no-starch diet for AS (what a fool I was–should have done a thorough search on AS treatment right away), which linked me to this blog, sickopportunity.com, and kickas.org, and after a little reading my wife and I decided I should just go all-out NSD that night. That morning I ate sauteed shrimp with spinach and avocado.

By about two weeks in (including some NSD novice missteps) my pain had gone from the 4-6 range to 0-1, which is where I’ve been now for four months, off NSAIDS for the last two. I’m still learning about the diet, and I turn out to be pretty starch sensitive. It seems I tolerate simple sugars and dairy in moderation. I will flare to about a 4 for two or three days if I eat the wrong thing: e.g. a fistful of macaroons on the way home from the supermarket that later tested jet black, an enzyme supplement I did not suspect (where the starch is in that I don’t know), maltodextrin, coconut milk, watermelon–these things have tricked me. If I’m careful and stick to what I know I do not flare at all.

A recent visit to the rheumatologist showed me two things: First, doctors can be disappointing here. It seems a lot of people who have used diet to treat their autoimmune disease have had experiences like mine: telling their doctor this amazing story about actually curing a crippling, incurable disease only to have them frown and tell you they’re happy that it ‘works for you’. What an unseeking, uninquiring way to respond. Thus the conversation ends where it ought to begin. Second, my bloodwork showed my CRP (an indicator for inflammation) now fell squarely in the normal range.

Then the recent trip to the cardiologist. Over the years my heart had mysteriously been improving its function bit by bit. Originally the cardiologist told me that this couldn’t happen, but it did: my heart went from pumping out 30% to 35% to 40% to 45%, with each semiannual echocardiogram from 2007-2010. I became glad I declined the invasive ICD. I don’t know how this came about, but my best theory is that the heart issue is either AS related or another GI autoimmune issue. When I was tested at 30% I had been a vegetarian for five years, but when I found out about my heart condition I gave it up on a recommendation from my cardiologist. I recently ran across one study Dr. Erbringer talks about showed that vegetarians have on average over 40 times the number of klebsiella in their feces, and of course there are all sorts of other differences in the gut flora too.

And this recent visit? Well I can’t be sure if the NSD is the reason but this echocardiogram showed my heart pumping out 55% of its volume with each beat–in other words: normal. The report literally says “all valves working normally”.

Of course I may keel over tomorrow, who knows. But I truly feel well now, which is just unbelievable. I recently took my first long, meandering hike in years (this, one of my favorite things in life, became one of my biggest no-nos). More importantly, my son Ben, our first, was born on April 12th and I have been able to be the legs of the family while my wife recovers. I’m hoping his dad will get stronger and stronger as he grows up. I’m truly thankful to the people who have taken the time to make the NSD a presence online for the sake of others like me. I usually avoid computers whenever possible, but I feel very lucky that we live in a time when we can spread ideas outside the orthodoxy so easily. It changed (and maybe saved) my life. Thank you.

If you’re thinking of starting NSD for heaven’s sake give it a try. If you want a teaser of what’s to come try a dinner to dinner fast. That’s simple–it’s certainly cheap–and very convincing.

Good luck!

Charlie

  • Lizzie

    Yes, I so agree with your remark that the “conversation ends where it should begin.” My son has been in pain for years and like you, he’s had years of suffering before discovering the starch link. If only we had known of this right at the beginning of his illness as to date, this crippling disease has robbed him of four years of his young life. On the day I discovered all this on the web, I was so excited that I stayed up half the night just googling, frantically looking for more information. And yes, we too are so grateful to all those who have taken the time to put all their NSD knowledge into the public domain. Wishing you all the best Charlie.

    • fazal

      Can someone advise?..The dinner to dinner fast that you do, does it involve drinking water or nothing at all….I’m trying to get red of my flare up in my neck every morning and it’s killing me